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HOVON in general
Malignant haematological disorders such as leukaemia, lymphoma and multiple myeloma are rare disorders. The number of people in the Netherlands confronted with any one of these diagnoses in a given year is between 2000 and 3000. It is increasingly possible to cure an ever larger number of these patients, despite the fact that, from an early stage, these haematological malignancies are often spread throughout the lymphatic system, the blood and bone marrow. The ever rising success rate has been achieved through constant intensification of treatment and the introduction of new technologies. Well-known examples are stem cell transplantation in the form of bone marrow or peripheral blood stem cells and the use of antibodies against lymphoma.
This steady improvement of treatment results has been achieved thanks to intensive cooperation between laboratories and clinical departments. The specialisation haematology is eminently suitable for such cooperation, because the malignant cells are relatively simple to obtain from patients by means of extracting blood, bone marrow or lymph node punctions. This makes continuous study of these cells possible, without excessively burdening the patients. In addition, it was discovered within haematology at an early stage that the results of treatment can be improved by inviting as many patients as possible to participate in clinical trials. Only then can new treatment methods be compared with already existing methods, to determine whether a new technique or new medicine in fact does improve the results of the treatment. In this way, patient care and research are combined to come up with new treatment methods.
2. Objective & policy
At 1 October 1985, six leading internist-haematologists from various university hospitals founded the 'Stichting Hemato-Oncologie voor Volwassenen Nederland (HOVON)' in Rotterdam, with the following objective:
'To promote optimum treatment of adult patients with malignant haematological diseases'.
The best way of achieving optimum treatment is to establish and implement clinical trials in which participate as many patients as possible. Because haemato-oncological disorders are so rare in terms of frequency, it is vital that the necessary expertise for treatment be made available to patients rapidly, and at the highest possible level, for example by establishing and managing networks of treating physicians in various hospitals.
3. Haematological intensive care centres
Since the establishment of HOVON, thirteen centres for haematological intensive care have gradually been developed. These hospitals are able to offer the full range of treatments for malignant haematological disorders, including stem cell transplantation and the treatment of patients with acute leukaemia. Alongside the eight university hospitals, other participants are the Erasmus MC - location Daniel, the Haga hospital in The Hague, the Medical Spectrum Twente hospital in Enschede and Isala in Zwolle and the Antonius Hospital in Nieuwegein. The University Hospital in Louvain in Belgium is another such centre.
In collaboration with the integrated cancer centres, from 10 of these haematological centres, consultations are provided in all hospitals in the Netherlands. This means that every hospital has a fixed haematological consultant who regularly visits the hospital, and with whom there is continuous interaction for consultation about and referral of patients, whenever necessary.
4. Carrying out trials
Carrying out trials starts with the development of a new treatment plan that is generally compared with an already existing treatment plan. A relevant question could be for example whether carrying out autologous stem cell transplantation in the case of acute leukaemia is a meaningful treatment compared to other forms of intensive therapy. When a research topic is posed, a number of people (active within the HOVON organisation) will draw up a study plan. The plan will then be discussed as widely as possible within HOVON, at meetings that can be attended by all interested parties from whatever hospital. The protocol will then be assessed by the statistical group within HOVON (the HOVON Data Center) and finally, at one of the six-monthly protocol days, submitted to everyone participating within the HOVON trials.
When approved, the protocol will make its way to the various bodies that must be consulted for approval, such as the Dutch cancer relief organisation (Nederlandse Kankerbestrijding), the various scientific committees of university hospitals and the ethical committees. Because trials are often initiated by people working in the field (doctors, internists etc), it is possible to ensure that the trials and the trial protocol receive the widest possible support, and that as many internists as possible are willing to invite their patients to participate in a trial. Collaboration is often also sought with other groups such as the Swiss SAKK, and centres in England, Germany, Italy and the Scandinavian countries. After all, by ensuring the widest possible spread, it is possible to include even more patients in the trial, making the results available more quickly.
5. Organisation of HOVON
The structure of the HOVON foundation appears in the following organisation chart:
The increasing number of trials being undertaken, and the geographical spread of participants (currently covering some eighty percent of all hospitals in the Netherlands) and the collaboration with other national groups mean overall that the organisation of HOVON over the years has undergone considerable changes. Whereas in the beginning the foundation consisted almost exclusively of those individuals who set up the foundation, and were therefore members of its Board, HOVON today has a twelve member Board, from whom an Executive of four is elected. The Board has at least one representative from the haematology departments of the university hospitals, from two general hospitals and one representative from the university clinic in Louvain. The Executive Board consists of the chair, a vice chair, a secretary and a treasurer.
The General Board of HOVON has the following members:
prof. dr. J.J. Cornelissen (Erasmus MC, Rotterdam)
prof. Dr. E. Vellenga (UMCG, Groningen)
prof. dr. N.M.A. Blijlevens (RadboudUMC, Nijmegen)
prof. dr. G.J. Ossenkoppele (VUmc, Amsterdam)
Dr. B.J. Biemond (AMC, Amstedam)
Dr. M. Hoogendoorn (Medisch Centrum Leeuwarden, Leeuwarden)
Prof. dr. J.H.E. Kuball (UMC Utrecht, Utrecht)
Dr. M.C.J.C. Legdeur (Medisch Spectrum Twente, Enschede)
Dr. M.D. Levin (Albert Schweitzer ziekenhuis, Dordrecht)
Dr. M. van Marwijk Kooy (Isala, Zwolle)
Prof. dr. H.C. Schouten (MUMC, Maastricht)
Dr. B.C. Tanis (Groene Hart ziekenhuis, Gouda)
Prof. dr. P. Vandenberghe (UZ leuven)
Prof. dr. J.H. Veelken (LUMC, Leiden)
Dr. M.C. Vekemans (UC Louvain, Louvain-La-Neuve, Belgie)
prof. Dr. P.C. Huijgens (IKNL, Amsterdam)
prof. Dr. P. Sonneveld (Erasmus MC, Rotterdam)
prof. Dr. B. Löwenberg (Erasmus MC, Rotterdam)
For complete contact details of the Board: see the tab page Contact.
Alongside the Board, the HOVON Data Center is an essential component of the HOVON organisation. At this Data Center, all trial proposals are assessed for their statistical value, and the protocols are eventually put down on paper. The Data Center collates all patient details from the various participating hospitals (often more than forty or fifty!) and processes these data in such a way that they can be simply analysed with solely statistical methods. The centre includes a number of trial managers, statisticians, data managers and ICT administrators, and is based at the Erasmus MC in Rotterdam.
There is also a HOVON Central Office that provides professional support for the day-to-day running of HOVON. After all, carrying out trials costs a great deal of money, particularly if you consider the necessity for processing huge volumes of patient details; it goes without saying that this funding must be carefully managed. A wide range of legal and insurance issues also have to be carefully considered. The HOVON Central Office is headed by an administrative manager who, supported by a number of secretaries, is appointed via the VUMC in Amsterdam.
The HOVON Office also organises the annual Dutch Haematology Conference.
Within the HOVON structure, there are two types of work group:
- Trial work groups, made up of experts in the field of for example acute leukaemia, lymphoma or multiple myeloma. In these work groups, discussions are held about new trials and recommended treatments. The chairs of these trial work groups are officially also members of the HOVON Board.
- Technical work groups, that consist of experts in the field of diagnosis and monitoring. Examples are the molecular biology working group, the imaging group, etc.
6. In-service training
For a number of years, HOVON organised biannual in-service training courses. However, since 2007 these courses have been absorbed into an annual conference organised jointly by the HOVON and the NVvH in January. The six-monthly protocol days are another excellent means of keeping up to date, because the latest developments and studies together with the results of current studies are discussed.
7. Financing of HOVON
The HOVON foundation is fully financed from self-generated funds. To date, the Dutch Ministry of Public Health has not been willing to offer the HOVON a permanent source of financing. As a consequence, the HOVON had to permanently provide for its own financing needs. Generally speaking, finance is provided by the pharmaceutical industry. After all, much patient-related research concerns the development of new medicines, or the use of medicines in new treatment strategies, such as stem cell transplantation. The pharmaceutical industry has a vested interest in good patient trials. Wherever relevant, for each trial, the HOVON establishes a contract with one or more pharmaceutical companies supplying the medicines that are the subject of the trial. This form of contract means that the costs of the trial and the costs for the central organisation of HOVON remain fully transparent. The goal of HOVON is to arrive at a more permanent form of financing over the coming years.
HOVON, once started as an experimental cooperative venture by a number of enthusiastic internists-haematologists, has clearly grown into a national organisation with a very high level of coverage. Some eighty percent of hospitals in the Netherlands have participated or continue to participate in HOVON trials, and each hospital is in contact with a consultant affiliated to a haematological intensive care centre participating in HOVON. Thanks to this flat and open organisation, new developments have an excellent likelihood of being translated into new clinical trials, and the positions taken up by HOVON have a broad impact.
By increasingly involving people from laboratories, the links between laboratory studies and clinical patient care are becoming more solid. In addition, the contacts between HOVON and other national groups in Europe and beyond are of considerable importance. In this way, HOVON is hard at work ensuring the availability of the best possible treatment plan for every individual patient in the Netherlands diagnosed with a haemato-oncological disorder.